So I see this facebook post on my feed today...

[GilWest]

trying to compare ALS to a disease called Cyclic Vomiting Syndrome wanting people to not waste water, etc., etc. I told them that most ALS patients would volunteer to vomit 24/7 if it would rid them of ALS.

 

[maryhahnward]

Ha! I like that response. In my newsfeed there was a link to 'why the ice bucket challenge is not working and why it is bad'. The reason for this that the ALSA supports embryonic stem cell research and it's not really creating awareness anyway, it's more about people's egos.....SO this CALS had to force the filter in her brain to stay in place. I did comment on it and asked if the people who feel this way would still feel this way if they had a fatal disease and the only cure was derived from an embryonic stem cell research project. Would they take the cure or would let themselves die? I'm not saying I'm in favor or not of this kind of research, however, anyone with half a brain would do the research and find out there a multitude of studies our there that do not involve embryonic stem cells and there is only one supported by ALSA, which a donor can ask that their money not go to it. As for awareness....really? It's been fabulous, many more people are getting it and offering kindnesses unheard of before.

Vent done.

 

[Clearwater AL]

Also, as I understand it, some these embryonic stem cells that are so needed can be obtained from the umbilical cord which is discarded anyway and a few other circumstances other than abortion but some groups refuse to budge or give an inch on it. No wish to start a debate here but the beliefs of few should not dictate over the masses to the possibilities of saving lives and finding possible cures. If your beliefs prohibit it... refuse the treatment.

 

[AfraidButNotAlone]

We had our cord blood donated. I don't condone the use of other embryonic stem cells so we declined inclusion to any trial like that. If they work, would decline treatment. Our choice, like Clearwater said.

 

[AfraidButNotAlone]

Also saw this on facebook regarding ice bucket challenge....


I hope you also talked with the class about other diseases that are just as devastating as ALS and are more common but don't have the fickle fate of Facebook feting their cause. And I hope you mentioned to them that if our government provided ample support for research people could dump water on their heads as a way to keep pressure on Nigeria to return "Our Girls" -- another fad that went away before problem. And I hope you were wearing pink, otherwise you don't care about breast cancer.

 

[Clearwater AL]

Rob, I admire your belief. I also admire that you don't condone it and will refuse any future successful trial using embryonic stem cells because of your faith. My issue is with those who condemn it with political threats over the possibility of slowing, halting or even a possible cure for others who may not have the same beliefs as they do from a discarded umbilical cord. Not just ALS but all MNDs.

Again, if a successful treatment/cure ever does come along from embryonic stem cells and you chose not to participate... I admire the strength of your faith.

 

[nebrhahe53]

Hell I'd vomit naked in public if I could be rid of this-every day for a year.

 

[affected]

Sadly as an Aussie I have to admit we had one newsreader air his view on tv this week about why we shouldn't do the challenges and he culminated it with this remark:

Ice is for keeping beer cold and nipples hard.

Man I'm embarrassed to be an aussie sometimes!

I have put my point of view online about it. He has apologised that he used his position to air his opinion but has not apologised for what he said.

In response to this a journalist wrote of her personal journey with her grandmother afflicted with ALS. Amazingly one aussie idiot responded with his reason why the challenge is stupid and said I hope your granny gets better .... yup really.

Some other aussie CALS and I have made an image and we just post this on fb now in response to any negative remarks.

 

[affected]

arrrrgggghhhh now I'm the idiot as I hit submit before uploading the image (which I have full rights to share how I see fit)



My Chris is the 4th image...

 

[MaxEidswick]

>which I have full rights to share how I see fit

don't think so w/o watermark ... :-(

 

[Atsugi]

Well done graphic.

 

[nebrhahe53]

Tillie-can I put your graphic on my facebook page?

 

[Trixie80]

I just seen this on my facebook page.
"In my opinion the people that are affected with ALS should stop making babies! If that is the main way to stop passing the condition for new generations than they should. I couldn't imagine! "
WOW is all i can say. How uninformed can people be, hopefully the #icebucket challenge can educate those who just dont know.

 

[maryhahnward]

Tillie - I love your graphic, it's perfect.

People can be quite ignorant. We probably can't change the way they think. This campaign has opened many people's eyes and that is sooo great. It is like a tidal wave of empathy that has swept our country.

 

[affected]

Neil you certainly may use it on fb.

We have all put it on our pages, public and it is being shared by others, and we made the graphic to use for the very purpose of being a way of responding to ignorant posts.

Not sure what you mean about the watermark Max? The ones who donated photos for the image all wrote that we gave full permission for open sharing of our image in any manner.

Sadly I think we have to expect that there is some debris floating in the tidal wave of empathy, and we should concentrate on the wave as it is amazing.